Fighting Parkinson’s, and telling somebody about your Parkinson’s

Fighting Parkinson’s Disease is an uphill battle. People become miserable with the disease and do not want to share their misery with others. Also, they become fearful of letting others know because they are afraid of how they will be viewed and how they will be treated. My feeling is that a large burden is lifted if you tell somebody about your Parkinson’s.

As explained in my last blog post, When I started doing the Parkinson’s Recipe for Recovery®, I also started a Parkinson’s Daily Journey. Here is my journal entry from six years ago today, three days after starting the Recipe:

“10/01/09. It is October. Where has the year gone. Today, Sally suggested I reset the alarm for 4:30. Got up, felt no better, felt no worse. No worse is a plus and I look for the pluses. Took me 8 minutes to get going to turn on the espresso machine. Oatmeal for breakfast — great breakfast again. Had a good morning of work, so feeling happy. Lunch was delicious — dumpling squash filled with sauteed onions, brown rice and wild rice. Sally really takes care of me. Just did the kidney and liver medical Qigong. After the liver Qigong, I stand straighter and feel physically exhausted but stimulated at the same time. I get a lot of tingling inside my head and my brain aches. I feel like the Parkinson’s fights me back. However, I am very patient and intend on winning. We had Italian Wedding Soup for dinner. It was wonderful. Sally and I did the kidney and liver Qigong together. I am blessed. I do not use the word lightly. I need to do the kidney and liver Qigong to fight Parkinson’s and Sally joins me in the Qigong so I won’t be fighting by myself. She does GV acupressure on me before I go to bed. I have an absolute partner in this fight. Sally is everything to me and gives me strength to do my exercises when I have no strength or desire. I think about Steven and Genevieve and Victoria all the time. How am I going to tell them? And Dad and Mark and Allison, after watching Mom. And Sally’s Mother and Mary and Jerry. What do I say? I do not know where to begin.”

I had a partner in Fighting Parkinson’s. I was tired in the evenings and Sally did the evening Qigong with me for about a week to encourage me. I then started doing the evening Qigong on my own. Eventually, we told our children about my Parkinson’s, and my dad and brother and sister, and Sally’s mother, and our closest friends, Mary and Jerry. I won’t lie. It was overwhelming. But it had to be accomplished.

I do not mean to be the bearer of bad news, but if you have had Parkinson’s for a while and you think you are “hiding” it, you are not correct. Here’s how the cycle works:

1. You are extremely self-conscious because you know you have Parkinson’s and you are hiding it.

2. As a result of #1, you act differently…face it, you cannot help this; hiding the disease is stressful and stress brings out terrible tremors and other symptoms.

3. People look at you as they have in the past, but now you think, “They are looking at me, they suspect something.”

4. As a result of #3, you act differently. Thinking people suspect something is wrong with you while hiding that something is wrong with you is stressful and stress brings out terrible tremors and other symptoms.

5. Now that you are acting differently, you think you have fooled them.

6. They know something is wrong and they know that you are hiding it. You are fooling only yourself.

What are you afraid of? What are you ashamed of? As difficult as it was to tell my children and my family and friends, it was liberating…I got to be me, disease and all. And there was an outpouring of love and compassion. There is no shame in getting Parkinson’s — it is just life. Please find somebody to tell about the Parkinson’s you have. Their love and compassion will go a long way in your recovery.

We all are in this life together and we are building an ever-growing beautiful community of friends who are fighting Parkinson’s Disease. I am inspired when I see your comments encouraging each other in this journey. So, even if you have nobody you wish to tell about your Parkinson’s and you do not wish to send me a note, please read the comments on this blog and know that you are not alone on this recovery journey.

howard TY, I need to find some holistic help…I was disagnosted in 2008. Im so anxious. Dr. answer is only meds, lorzapan , and sinemet. Im not functioning well.
I pray a lot. I know my God is great and he is good..that how I get through.

Hi Betsy, sorry it’s a grey day where you are in yourself. There is light there too Betsy as you found Howard and his blog, so God is listening and guiding you, he guided you here. Hang in there friend, the sun is never far behind a grey cloud.
Karen xx

Hi Betsy ,
Thanks for sharing your thoughts and feelings with Howard, and with each of us. I have found Howard’s information and help the very best. Know that you are among friends who are pulling for you and cheering you on to good health 🙂 You have come to a very exciting place. I hope that it will help you to turn a corner in your life and health.
Sending love and blessings
Have a great healing day
Debbie

Hi Howard and fellow warriors, yes very important post and like you have said before Howard, it is really important that we have one person who we can be ” real” with on how it really is on a day to day basis. It’s funny but although I am single, I have never felt less alone in the last year. I know that is not only because of my fellow warriors and their share, but because I feel my souls presence getting stronger through meditation and gratitude, which quiets the negative chatterbox of my mind. Big love to all. 2 posts in one week Howard, feeling the Love! 🙂
Karen xx

I was diagnosed almost 2 years ago and only my husband and a couple of close friends know. I haven’t told our children ( adults), or any other family. This is partly not to worry them and partly because I don’t deal with fuss and sympathy very well! I know my mother will see only the negative and I’m determined to only see the positive, bless her she is a wonderful mum but likes something to worry about. Love her to bits. ?Problem is I’m becoming a bit of a recluse in order not to expose the difficulties, which I know is not good for me.

Can I ask my fellow warriors do you find conversation difficult? I find chit chat so boring now, and I think people must find me quite anti social. Im always polite and listen, try really hard to make an encouraging comment but underneath I’m so irritated. Maybe I’m just turning into a grumpy old woman! ?

Yes! I cannot do chit chat either! Been a while now… I listen deeply. Ask people more about them. And if they directly demand more about me, I say, “I do the same old things and I have never been happier”, which is the truth. It kind of confuses people. I smile broadly. They usually change the subject! Relationships have changed. Evolved. Very peaceful.

I think a certain withdrawing is part of the path. After two or three years I started telling everybody. I didn’t at first for the same reasons as you. Found telling people made things easier. Vastly simplified my life. When I tell people I always add “and I’m going to recover. Since the discovery of neuroplasticity Parkinson’s is no longer seen as incurable. It is absolutely curable. Hundreds of people have cured themselves. It’s all on the internet.”

Hi Christine, I smiled at your comment. I think I find chit chat exhausting because when faced with a major challenge, as we are, you become aware how people truly do sweat the small stuff. :-). I see it as a choice to exercise compassion, but I’ve also observed that at times when I chat,my legs start to shake. I have wondered why that is? Maybe brain used in speech generates energy to blockages? I’ve no idea. Lol. I try or should I say ” chose” to see it as a positive, energy moving hitting blockages. 🙂
I have also made peace with the fact that everyone’s challenges is relevant in their lives. We don’t know how it is for another, to walk in their shoes. You can’t explain the overwhelm of Parkinson’s unless you have experienced it. I often think if family n friends witnessed the daily challenges, like getting in and out of bed, turning in bed, being stuck to the spot, where you can’t go right or left, forward or back, they would just bleed for us. Strength of character and determination is massive on this journey! That’s why I say we all ROCK! xx

I too find chit chat quite irritating and exhausting and think, as Karen says, it’s because of the challenges we ourselves face daily. Although generally I’ve learnt over the past year to be more open about Parkinson’s I find there are certain people (for various reasons) I don’t want to know, and so I try to hide it, which of course, as Howard says, makes symptoms worse! I am just getting round to realising that I’ve got to get over it but it’s taken time to work through it and get to this realisation. This is a big learning curve and I am incredibly thankful for Howard and this wonderful supportive community of warriors.
Christine, you will get there. It’s hard to open up, sometimes harder with family as you don’t want them to worry and maybe see you vulnerable (that was my problem).

Cynthia, I, too tried to hide my symptoms for a long time, and recently have turned a corner with several people knowing and it is liberating to not have to try to hide it. I also used to have a hard time allowing people to help me as I struggled to function. I have gotten over that also but it took a while for me to get to the point of acceptance. I was diagnosed 10 years ago after that mercury poisoning. I am so grateful to have and have I was diagnosed 10 years ago after about mercury poisoning. I am so grateful to have found Howard three years ago but wish I had found him sooner. Better late than never. I have made great strides in my recovery during the last three years doing the recipe! Finding Howard and his recipe has been a godsend and full of love and hope!

This blog provoked a lot of emotion for me. I think what you are getting at here, Howard, is at the crux of my healing. Much of my life has been about, “looking good.” And the truth is that some days I am not always “feeling good.” I am getting the glimmer that being authentic to my experience is the cutting edge of my healing from PD, and sharing with my wife and good friends about the ups and downs of my progress is cracking through the “armor” of my needing to look good. And with this cracking comes a paradoxical sense of vitality and resilience.

I am the Mary of Mary & Jerry. Jerry & I feel so blessed and so lucky to count Howard & Sally as our closest friends. Ours is a deep friendship of many decades, one in which we have also been tremendously honored by being “Aunt” Mary & “Uncle” Jerry to their children. I clearly recall the moment that Howard’s having PD was shared. It was a moment of love and honesty and sharing and fear, so many emotions. For me, it was a gut punch; simultaneously, I had the eerie sensation of it being one of those indelible moments after which nothing is ever the same. I was very aware of what PD meant to Howard’s Mother and my dear Aunt Betty and was especially frightened that Howard’s PD was evident at, what I felt was, a relatively young age.

We had known something was amiss with Howard but we couldn’t put our finger on it.
Many of the symptoms he has described, we witnessed: his pace and difficulty with stairs, his inability to lift a utensil to his mouth in a normal fashion, and on and on. Of course, we were painfully aware that we only saw the tip of the iceberg. We have since witnessed Howard’s recovery and have been privy, as all of you are via his blog, to his and Sally’s journey.

Howard’s Recipe is, in part, the result of countless hours of self-education and research into eastern medicine and philosophies as well as western medicine and the so called treatment offered. Although suffering, Howard was totally relentless in researching, delving into new subject matter and dissecting data.

His PD journey has been astonishing and the finale, beyond wonderful. He has literally walked the walk, initially haltingly and with difficulty. Now, he stands upright and is, dare I say, virtually glowing in good health. I think what we see on the outside is both the result of being healed from PD and his soulful, loving, altruistic and unceasing efforts to help others. In recovering from PD, he applied love, patience and forgiveness to himself, others and to the Universe. He is likewise guiding us all to do the same, PD sufferers or not. We are all worth it. Worth effort, worth work and perseverance.

Howard is simply remarkable. And, we know that his recovery from PD is not singular nor unique. We love Howard & Sally. Jerry & I are immensely grateful that they are in our lives, that they trusted us and shared with us.

Thanks Howard for another great post.
Thank you Mary so much for taking the time to share such a beautiful message. It is uplifting to read the thoughts and heart of someone who has been told about a friend who has Parkinson’s. All my family and close friends know that I have Parkinson’s. I am so blessed because they all support me 100% in following the Recipe for Recovery and give me so much love!! I am grateful. I have not told some acquaintances . I think it is not because I do not want them to know….but maybe because they may question the route that I have chose to go. I do not think that they would think any less of me. Maybe it is because I know that I am so much more than Parkinson’s and I do not want them to feel sorry for me and only think about what happens when you take the medical route. I do not want them judging how I am doing by my symptoms. I am not real sure. I can see from these posts that I am judging those people and probably wrongly.
I should not concern myself with what anyone may think, or anything else that I don’t control, for that matter 🙂 I should turn that over to God and use all my energies for positive things that I do control .
Thanks for the post Howard.
Thanks for the comments everyone. It has given me something to think about and really be honest with myself in my answers.
I am grateful for this day, and for my life. I am thankful for each one of you and for the honest sharing that you do with me. Have a beautiful healing day.
Sending love and blessings
Debbie

Thanks, Debbie. I do not have PD and so my perspective is limited. Those who support you are your real friends. Those who judge you either aren’t and/or are operating from ignorance. Ignorance is just not knowing. You and your journey will help them learn! Best wishes!

I, too, used to devote a huge amount of energy and effort to hide my symptoms. I was embarrassed and did not want to have a conversation with anyone about what was going on with me, though today i have been told by some of my adult children that they knew something was wrong.
Now, i just “let it all hang out”, as they say. This is me, this is who i am right now, take me or leave me, that is your choice. I still feel embarrassed sometimes, but no more hiding or denying. I’m fighting, and if someone thinks I’m delusional, or crazy believing in the Recipe, frankly, i don’t care to hear about it!
Kudos to all!….we are a unique lot; special, blessed, strong! Thank-you, Howard.

Thanks for this wonderful blog, Howard, which has stimulated so many really helpful responses. I’ve been without internet access for the past week (for a very positive reason – I’m on holiday in a small village in the North Yorkshire Moors) and I’ve really missed being able log in and spend time with you all. It’s been really good to log in today and find this inspiring blog and comments. As always, thank you Howard and all.

Wow great comments. Yes it’s a relief to tell people and accept myself I am recovering from Parkinson’s and I have it. I have had to learn patience compassion and truth telling when people ask me what I have and they go into a long dialogue about how badly affected their husband or friend is with parkinsons. They seem to have no sensitivity about telling me who has Parkinson’s the worst case scenarios. Luckily I meditate have slowed my pace down and live more from my heart since being diagnosed. It’s been 4 years now a lot of self discovery. Learning about strength and handling pain etc. It certainly sends one inside to the peace n love to shelter. It’s like every challenge there’s learning gifts and hardships. I am traversing this life as best I can on the ship of love. Thank god for grace life friends and all of you and family and best of all the love Helen australia

PS.getting Parkinson’s has made me a better person. And I am so grateful for that i am loving life myself and others so much more warts and all. People tell me I am an inspiration not because of my walk but I feel it’s because of my inner happiness. Thank you

Howard,
I’m sure it isn’t, but right now this is your best post ever – thank you for putting in words what many must be thinking and feeling. Can’t wait to see what you will share with us next!.
Sending blessings for healing to all,
Linda

It was interesting to hear of others comments about social chit chat, PD has changed me from a sparkly extrovert, into a quiet introvert with minimal conversation. I found my social skills were diminishing even before my diagnosis 4 years ago.
My husband of 2and a half years, then decided a diagnosis of PD was not what he’d signed up for and left, which was heart breaking at the time, but now I think he did me a favour. I live alone and focus on recovering, with Faith, Patience and Acceptance. May God Bless each one of us in our daily battle.

Rebecca, in ways I think it can be a gift on this journey being single. We get to focus solely on our recovery and don’t have to worry how we affect a partner. AND just think what we have to offer another when we are operating from our shiny new teapot self. Love does not walk out the door when challenges walk in the door. Bless your husband for walking away, God and the Universe will amaze you with the man that is waiting in the wings. He will appear in the right time, space and sequence. Just you wait and see. 🙂
Karen xx

I really appreciate being able to read all of your comments. I’ve never had a problem telling people that I have parkinson’s, but I don’t talk much about it with others because it seems like they all want me to increase my medication. Talking to Howard in our Skype sessions helps me tremendously.

Dear Howard , thank you again for the wonderful topic. You are the saver of PD patients and their caregivers, you are always encourage us at the right place and the right time.
Yes, Rebecca, the social skills for my husband, who has PD for 10 years, deeply went down. He never was the ” talkative ” one, but with PD even worse. So I am the one who “talk ” for both???
I wish we can all gather together , and talk , and talk , because we would understand each other much better, than others , even close people.
People do not understand you , they either looking at my husband closer, so he would start to worry more, or expect from him to act as normal….go figure
I do not complain, we are trying to leave a normal life with his PD , but people are people?
And a BIG thank you again to Howard!!!!

Thanks Karen for those positive words, God has already blessed me with kind and understanding friends, and I am managing to still work around 10 hours a week.
So life is quite good, and its now Springtime here in New Zealand, which is very welcome indeed. I find getting out in the sunshine, tremendously beneficial, the Vitamin D works wonders.

New Zealand is beautiful. I have been 3 times when my son was little as my sister used to live in Cambridge, North Island. Rebecca, one of my favourite things about being there was everyone walks around in their bare feet in the summer, even in the supermarkets. 🙂 I love being in bare feet! Lol.
Karen xx

I have often felt, like I don’t want anyone to see me. I was a spiritual singing teacher and had many students in New England. I moved 6000 miles away in the third year of my PD, and I haven’t wanted any of my old students to see me. I am working on my reluctance to be seen and vulnerable.

Shawna what a fabulous gift to be a spiritual singing teacher. When I sing spiritual songs, I feel goosebumps in my head, which is dopamine ! You sing your head off girl and get that dopamine flowing again on full throttle! 🙂
I wish I knew more spiritual songs!
Karen xx

Hey Karen, interesting to learn that you’ve visited New Zealand.
Yes life is more relaxed here, and I do enjoy barefeet, although wouldn’t go so far as to go shoeless, when going out. I’ve just started getting out in my garden again, and love the feel of the grass under my feet.
I’m in Nelson, South Island, and look forward to a summer of sun, sand and swimming at the beach which is a 10 min drive away.
PD hasnt yet robbed me of my ability to enjoy life.